Day +43 Restrictions

Date: 10.26.18

Time: 3:33pm

Fun fact: Every time they draw blood, they do a "cross and type" test that tests your blood type because my blood type will be changing.  My doctor confirmed that my blood type will change from A+ female to B- male (meaning that my donor was a B- Male).  Crazy, huh?  This works because HLA typing doesn't have to do with blood type, it has to do with tissue typing.  This means that I will become a Chimera.  

"Chimerism is a condition whereby a person has not one but two complete genomes (sets of DNA) in their body. One genome is found in one region or organ(s), while the other genome can be predominant in other organs or tissues."

My blood will look like it belongs to a B- male, but any other DNA (hair, saliva, skin cells) will be me.  If I were a criminal mastermind, this would be ideal, but I'm not, so it just seems kinda weird and gross.  

I haven't been to UCLA since Monday, and I'm so glad to be home, but I still live with a bunch of restrictions.  Most of the risks associated with a stem cell transplant come AFTER the chemotherapy and the actual transplant itself.  Be The Match says, 

"Some risks are common like temporary hair loss and infections. Others are much less common, like your body rejecting the new cells and possibly death. Some risks are only with certain types of transplant. For example, graft-versus-host disease (GVHD) is only a risk after an allogeneic transplant (cells from someone else). 

The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant. "

One academic paper that I read said that over 50% of patients are readmitted to the hospital in the first 100 days following transplant.  I plan to avoid this by adhering to the post-transplant restrictions.  Some of my restrictions that will last until Day +100 or beyond:

- cannot go into public places without a mask

- must stay out of the sun between 10am and 4pm

- must wear long sleeves/hat anytime that I am in the sun

- must wear SPF 30 sunblock if going to be exposed to sun

- bed linens must be changed once per week

- towels must be washed at least twice per week

- must change to a new toothbrush every two weeks

- no gardening, digging in dirt, or touching soil or plants of any kind

- no dusting, vacuuming, cleaning bathrooms

- can pet cats, but must wash hands immediately after

- cats are not allowed to sleep on bed/in bedroom

- no cleaning litter boxes

- no drinking well water; can drink bottled or tap water only

- no eating food prepared by someone else, unless reheated to at least 165 degrees

- no raw or under-cooked meat, cheeses, eggs or unpasteurized dairy products

- leftovers must be eaten within 48 hours or disposed of

- no driving

- I still have my PICC line, so no lifting above 20lbs

- I must cover my PICC when I shower with a glove from hand to armpit

- avoid crowds; no going to public places when they are busy

- cannot be around anyone sick, or anyone that has been exposed to anyone that is sick

- cannot be around anyone that has received a live vaccine within 4-6 weeks

In addition, I still take my trail mix of medications several times each day.  My immune system is being suppressed (by Tacrolimus), so that my new immune system (the cells that they infused me with) can grow without the two going to war.  That means that I am extremely susceptible to any kind of infection - things that your body would normally be able to fight off could attack my body since I have little defense.  To try to keep that from happening I am on several medications that prevent infection.  Daily, I take Noxafil (an anti-fungal), Acyclovir (an anti-viral), Atovaqone (anti-fungal), and am supposed to get IVIG (anti-viral) infusions weekly to prevent infections.  Additionally, I am on a blood pressure medication (the Tacrolimus raises my blood pressure), magnesium (Tacrolimus eats the magnesium in my body), a liver protectant (Ursodial), an acid reducer (Tacrolimus can also cause heartburn), Prednisone (steriod), Compazine (anti-nausea), and my sleep aid -  which I have started again, since I think that the Tacrolimus is the culprit behind my headaches - Trazadone.  Tacrolimus sounds like a nightmare doesn't it?  Well, since it is the medication that is preventing rejection of my new cells, and working to prevent GVHD, it is a necessary evil right now.  I will most likely be on all or most of these medications for at least six months.

Gettting IVIG 10.18.18

Since I've been home, I've found that I can't really predict how I'm going to feel.  I've had headaches when I didn't expect to, been so tired that I've slept until 1:30pm in the afternoon, wanted to go take a walk, but didn't have the energy, and been unable to sleep in the middle of the night, even though I thought that my sleep issues were starting to resolve.  Every day is a new one, and I kinda just have to take it as it comes and not try to make any plans to be productive, since I never know how I am going to feel - if I'm going to have a debilitating headache, or need to sleep half of the day, which is frustrating, but I'm trying to give myself time and grace to heal.

High Opinions

Results are in from HLA matching.  My sister is not a match.

Cause that's how I roll, apparently.  The path of MOST resistance.  EVERY.  SINGLE.  TIME.

You know how people say that God doesn't give anyone more than they can handle?  Well, God has a very high opinion of me, apparently.

New appointment with UCLA in a couple of weeks.  We'll see what our next move is.

Stay tuned...

Testing...1...2...3...

Some days I ask myself, "Is this really my life?"  How many people have to drive an hour to have labs run every ten days?  How many people have to ask their family members for blood? (To get HLA typed?)  How many 36 year old's have to juggle "old man cancer" on top of a full time job, building a house, and planning to get married?  How many people with CML fail to respond to the miracle drugs that keep the cancer at bay for so many?

Oh, just me?  Ok, then.

I guess this IS my life.

HLA test kits came in the mail last week.  So weird.  HLA stands for Human Leukocyte Antigen - which is a test that identifies the unique properties of a persons immune system.  To put it simply - it's actually much more complicated - but essentially, HLAs differentiate "self" and "non-self" cells.  The cells that are identified as belonging to an individuals particular body are left alone to do their own thing; the cells it sees as foreign are attacked and destroyed.  HLA testing is used to determine compatibility for a Stem Cell or Bone Marrow transplant.  The goal is to find a donor with cells that match your specific HLA antigens most closely, so that the body does not recognize them as foreign and try to attack them.  During a SCT/BMT (stem cell transplant/bone marrow transplant) the recipients blood making cells are destroyed through chemotherapy and/or radiation (they keep on making cancer cells instead of healthy cells, so they're not doing their job right, anyway) and then the recipient receives cells from a donor that will hopefully grow and build a new cancer free blood making system.  Easy peasy, right?  Not so much.  They pretty much have to kill off the recipients blood making system, rendering the body essentially defenseless to any kind of infection, until the donors cells start to grow and multiply, and start to provide some protection.

So why does any of this matter to me?

The first Ponatinib results are in, and they are not as good as I had hoped.  If you'll remember, every couple of months I get tested for the amount of cancer that is still present in my cells.  I've referred to it as a BCR-ABL PCR test.  On Tasigna 800mg I'd reached an all time low of 4.003%.  I was hoping that Ponatinib would push it down even further, but alas, my measurement on 9/23/16 was 9.487%.  So, going the wrong way again.  (Ponatinib is supposed to be the major bad-ass of all TKI's too, so I just don't get it.)  The majority of people with CML respond well to TKI drug therapy, but I've never tested below 4% to date.

BCR-ABL PCR

So, in light of recent testing, it's one step closer to the SCT/BMT back up plan for me.

My sister is amazing, for those of you who don't know this.  I called her up Monday morning, made small talk about her children's parent teacher conferences, told her I had a bottle of apple wine for her, and casually slipped into the conversation that I needed a couple of vials of her blood, if she could spare it.  And like a lightening bolt, she made it happen.

I, myself, have been in "avoidance mode".  UCLA called me a month ago, and I refused to listen to the voicemail for three weeks.  I finally decided to be an adult about it, listened to the message that prompted me to schedule my blood testing, wrote the contact number down on a piece of paper, and promptly shoved it in the bottom of my purse.  Well, turns out that the transplant coordinator is better at her job than I am at being a responsible adult, and she called me again last week.  (To my credit, I did answer the call, so I feel like I should get some kind of consideration for that.)  She had blood testing kits out to me within two days.  Now, my plan was to let them sit in my cupboard for a week or so, you know, just to adjust to the altitude up here (that's not a thing, I made it up) and give me a little time to stew about it, but Lacey wasn't having it.  (When a person needs a SCT/BMT they first test all willing siblings.  There is a 25% chance that a sibling with the same mother and father will be a match.)  Time elapsed from when Lacey first learned about the testing, to the time they were being couriered to UCLA, was a total of about 2 hours.  Thank you to my little sister for being the grown up.

Now that the tests are in, I fully expect to hear from no one for the next month or so.  I'm not an urgent case, so it's very likely that no further steps will be taken unless something in my blood work goes considerably wonky in the not too distant future.

Which is not my plan.

I'm done with wonky.  I'm done with special.  Had enough of unique. I'd like to place an order for boring and predictable, please.  C'mon body, a little cooperation would be nice this time.